Wednesday, July 30, 2014

Ventilator coming out soon!

Last night my mom and sister visited, and my mom said "You must be really tired, you have spelling errors in your posts!" Um, yes to both.  Monday we were running on adrenaline, the last two days we've been able to sleep, just not ever get caught up and feel uber refreshed.

Miles is on very mild sedation but they're slowly taking him off that more and more. He's had many practice runs off his ventilator and has passed with flying colors, so after rounds this morning, the RT is coming to take it out. I hear they want him very awake, and very pissed...(weird, but that's how they knew he's awake and alert and ready). It hurts being taken out, and makes for a real sore throat after.  But, he'll be happy to get it out. HE HATES IT. He does have periods of semi wakeful ness, responds to our touch and voices, and shows pain and discomfort by grimacing.  However, that's probably just not pain and discomfort from the ventilator, it's also extreme gas that has built up in his guts from the ventilator and chest drainage tubes.  I probably won't be in the room when they take the ventilator out, Ryan said he will though.

He also has pacer wires still in, which are attached to his heart. He isn't on any external pacemaking machine anymore, which is great, but the wires are there just in case.  When those come out (probably late today or tomorrow) they literally yank, FAST. An MD does it. Also, his chest tubes will also be taken out, and I think it's those or the pacemaker wires that have sutures inside that after they pull them out, they internally suture a little.  Older kids have said that those chest tubes hurt worse than the incision site.

We haven't seen his incision site, but we learned it's glued together. Yep, glued. No Elmer's here, but some skin glue.  Inside he has some metal wiring closing his sternum, and a few layers of internal sutures. I thought for sure we'd see a Frankenstein, stapled wound. Guess it won't be the case. 

Yesterday Nora and I went to Brueggers across the street for a quick lunch. (She works across the street from Amplatz) Ryan was at work, and Miles was still pretty out of it so it was a good time to go. And it was nice to feel the sunshine!  Later, my mom and sister drove up for the afternoon to see us.  Grammy had tears, but got it together real quick and promptly began asking the nurse questions and telling her what Miles needed or should have. "I think he'a cold. I think he's in pain, etc." Ha, I'm guessing that's pretty typical of grandparents.  They didn't mind though.  Nora and Mike brought back a big meal for us to eat last night.  The food here is not so great, typical hospital food. Over priced, not very good.  Parents don't get to eat for free, even nursing mothers. That totally baffled me.  I'm sure insurance is paying for all room and board, and food is included in that. I mean, Miles totally needs french toast, oatmeal, and chocolate milk for breakfast. :)

The ventilator come out soon, the yellow ng feeding tube has just been to get a wee bit of breastmilk in him. They stopped feeding 4 hours ago, because they don't want him puking when the ventilator comes out.  We'll bottle feed this afternoon! The thing on his head is some sort of thing that meausures brain activity. That comes off today too.  Late tonight or early tomorrow, the line in his groin will come out too. Slowly but surely, the tubes are coming off.

Ryan decorated Miles' door. Other kids had stuff on their doors, Ryan thought he should too. And he thought it was a good idea to let people see what he looks like without all the wires. Most of the kids with decorated doors are kids who have been in the PICU a very long time. Guessing most are transplant kids.

Ryan working from the hospital room for a little bit this morning, awaiting the ventilator removal.

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